Monday, September 17, 2018

Week 265: Impact hammer

Just in case we thought that balancing elementary school and CF would be easy street, the second week of the school year put us in our place. First of all, on Wednesday we had our much-anticipated visit at the CF clinic, which meant that I had to keep Lemon out of school for the day. As expected, the random pulmonologist was essentially a neutral force--she listened to Lemon's lungs, said that he sounded great, asked if I had any questions, and left. Our dietitian was sort of shocked by Lemon's weight gain, and agreed that since he is now in the 92nd percentile for BMI, we can back down even further on the tube feeds. So, now we're down to 2.5 cartons of formula plus some DuoCal overnight. I did not want to give up the DuoCal because I feel like it somehow results in better weight gain for Lemon than an equivalent number of formula calories. I don't really have any evidence for this feeling, other than the fact that Lemon has gained something like 7 or 8 lb since we introduced it, but I also like having it on hand for when he is sick and we have to take the volume of his feeds down. Anyhow, to go from 4 cartons of formula per day to 2.5 over 6 months feels like a tremendous advance.

We also made progress on project pill--that is, switching all of Lemon's medications over to pill form now that he is such an adept pill swallower. There was a ranitidine pill available in the same dose as Lemon was getting with the liquid, so that was a straightforward substitution. After consulting with GI, it was decided that we could give Lemon the smallest available ursodiol pill, which is a little bit of an increase in terms of dose per unit weight but still well within the dosing range. The upshot of all of this is that 1) Papa Bear and I will no longer have to spend half our lives washing syringes and 2) we won't have to mess around with Lemon's button and extensions and whatnot in the morning anymore. It doesn't sound like much, but this is really huge for us, and for Lemon--now he can feel more like a regular kid, who just takes a few pills in the morning rather than having someone lift up his shirt, connect a tube to him, and pump stuff in.

Just to keep things interesting, Lemon and Lime both contracted a beginning-of-the-school-year cough, which appears to be something of a widespread and time-honored tradition in our school district. With Lime, of course, we can just sort of let things ride, but with Lemon, we have to intervene a bit. I picked him up from school early on Thursday to do extra therapy, and even with that he coughed to the point of puking during the night Thursday night, but then seemed fine Friday morning. Friday mid-day I got a call asking me to pick him up at school because he was sick, but he came home, took a nap, and seemed totally fine afterwards, and not coughing much, so I chalked it up to exhaustion/dehydration/hunger from the adventures of the previous night. I did an extra round of therapy on Friday afternoon, too, even though he seemed pretty much OK. Then Friday night, he coughed almost as much as Thursday night, and with the same results. Blech. So during the night Friday night I decided that we'd better start Cayston on Saturday, because he was clearly sick. But, he seemed so well on Saturday that I couldn't bring myself to start it. And indeed from then on he's seemed basically fine, almost no cough at all and the formula staying where it belongs.

All this makes me think I really need a new metric to decide when to intervene with antibiotics. My metric used to be coughing through the night with puking. But, he did that two nights running and seems (fingers crossed) to have kicked this without antibiotics. So, had I followed my first instinct to start Cayston on Saturday, we would have done two weeks of it for no reason at all. I feel like I need some kind of dip-stick or meter that he could breathe into that would tell me if the problem was being caused by bacteria or not. I don't second-guess my decision to treat H. flu aggressively back in June, but that was a much easier call, we were all sick and on antibiotics. But some of the previous things where we attributed his recovery to Cayston--were those really bacterial? Or would they have cleared up without intervention? There's no way to know, and it feels so primitive to be shooting in the dark like this. I don't want to intervene when it's not necessary, and I want to intervene in the most effective way possible when it is. The fact that we can't distinguish between the two in this day and age is beyond frustrating.





Monday, September 10, 2018

Week 264: Hedgie

We have ourselves a kindergartener! I am pleased to report that the first week of school went more smoothly than I had imagined. We had no official enzyme plan in place on the first day, so I just tucked a big bottle of pills into my pocket on our way to school and handed them to the teacher with the following detailed instructions: "Two for snack, three for lunch." And that was that. As far as I have been able to gather from the 90 seconds of conversation we've managed since then, there is a now school nurse. Her name might be Heather, although I'm not sure. It is possible that Nurse Heather may give our classroom teacher a form to document the administration of medication. I don't believe that this has happened yet. And also there may be rules about it. But hey. Is Lemon getting his enzymes when he is supposed to? By all accounts, yes, and his digestion seems to be working as normally as it ever does, which is evidence that things are happening according to plan.

One of my worries when Lemon started school was that he wouldn't eat anything at lunch time and be a wreck by the end of the day every day. And, I've been pleasantly surprised in that respect. While he doesn't eat anything that would normally be considered a lunch, he does eat something every day. He reliably drinks his whole juice box, which is a good start, and then he also usually consumes something on the order of half a string cheese, a vanilla wafer, and half a grape. It doesn't sound like much, but honestly it's way more than I expected for the first week. Also, he spontaneously commented to me that one of the things that he liked best about school was "how they have such great food for lunch." I asked if he meant the food that was in his lunch box. He said yes. Then I asked him if he had any idea how the food got in there every day. He said the school put it there. Thanks a lot, kid.

We live walking distance from our elementary school, and it has been really fantastic to be able to walk him to and from school every day. I had not anticipated how much I would like that--both the time walking with him, and the fact that it is SOOO convenient. I remember when we first moved here, when he was 6 months old, I would push him in the stroller on a walk around the block and tell him, "Some day you will go to school here." And now we are there. Wow.

What actually transpires at school remains something of an open question, as Lemon is not terribly forthcoming about the whole thing. His teacher posts lots of happy pictures of everyone on the school's app, and he is in a good mood at the end of the day, and I think I'm fine to just take that for what it is.
















Lime sailed through the transition to the 3-year-old classroom at preschool. And, I have to say, he really rather likes having his afternoons at home with just him and the nanny with no one beating him up or competing for her attention. Speaking of the nanny, on the first day of school she announced her intention to quit, so I am launching into a search for her replacement now. It's great timing to find someone new (HAHAHAHA) because over the next 8 weeks I believe Papa Bear and I have 8 out-of-town trips between us. Plus the ongoing adaptations to the new school and schedule and whatnot. Kids love change. Anyhow, we've rolled through child care crises before so I'm sure somehow we'll roll through this one too. But ugh. Until the nanny announced her intention to quit I was planning to have Lime do 4K at his same preschool and be home in the afternoons. Now, I'm thinking I might be kind of done with arranging in-home child care, and that I will just send him to a full-day 4K program when the time comes. We shall see.

Not wanting to go to long before having a CF-related opportunity to miss school, Lemon has his quarterly clinic visit on Wednesday morning. I had been vaguely looking forward to it, or at least not dreading it, since I do like to have his progress assessed, and we have a few questions for the team this time around, mostly about which of his medications we can switch over to pills now that he is such an amazing pill swallower. But, I just got a call from the clinic on Friday telling me that our nurse practitioner had a family emergency, so instead of her we are seeing Dr. Random Pulmonologist. Now, admittedly, I have never met this particular Dr. Random Pulmonologist before, but my previous experiences with other members of this class have not left me with very high expectations, so the visit might be a big waste of time. Sigh. But, of course, rescheduling with the the nurse practitioner isn't possible unless I want to wait until December, which is when we are due for our next visit anyhow. So, we'll just go in with low expectations and hope that somehow they are exceeded.






Monday, September 3, 2018

Week 263: Teenage dream

Wow. We definitely got maximum mileage out of the last week of summer. At the beginning of the week, we were still in Lake Geneva with Grandma and Grandpa. While there, we took the kids out to dinner at restaurants twice and lived to tell the tale (barely). We came back here to Madison on Wednesday afternoon, and enjoyed one last day in Madison before the grandparents flew back to New York on Friday morning. We all had a great time and hopefully they will be back to see us soon. Luckily/miraculously, whatever cough Lemon had managed to resolve on its own, with just one or two extra sessions on the vest to help clear it out. Phew.























We had two fairly normal family days on Friday and Saturday, after Grandma and Grandpa left. Then early Sunday morning I left the house to go to the airport for a (very) quick trip to New York for a cousin's wedding. It still strikes me as a bit ridiculous/decadent to go to New York for less than 24 hours, but I did really want to go to the wedding. I've missed the last 3 cousin weddings due to variously being too pregnant, having the kids be either too young or too sick for me to travel, or just living too far away to travel to them easily. So this wedding was really four weddings worth of family celebrations in one for me. And oh my, I had forgotten just how easy it is to travel solo compared to traveling with the whole entourage! It was great to see so many people that I've known my whole life but not seen for so many years, even if it was just for one evening, and to be there for a really joyous wedding. Then this morning I got up at the crack of dawn to fly back to Wisconsin, and here I am.






























Kindergarten starts tomorrow. I still don't quite believe it, but in just under 12 hours I will be dropping Lemon off for his first day. After all that advance planning and meeting the teacher and everything, do we have a plan in place for enzymes yet? Thanks for asking, and no, no we don't, or at least not that I know about. I'm just going to bring a bottle of them with me when I go to drop Lemon off, and we'll see what the story is. Anyhow, both kids are in solid form for their first days: Lemon drew all over his arm and face with a purple marker while I was away, although luckily I was able to get about 60% of it off in the bath tub this evening, so he will only be lightly stripey when he meets his new friends. Lime, meanwhile, did some sort of new gymnastic maneuver in his bed early this morning that resulted in him hitting his face on some aspect of the bed frame, leaving a black eye that has his left eye almost completely swollen shut. So, yes, everyone will know right away that we are a Quality Household where things are Totally Under Control. We strive for accuracy in first impressions.







Monday, August 27, 2018

Week 262: Afloat

Well, that was a week, for sure. When I last touched base with you all, I was bailing out our basement amidst a record-breaking storm. Madison got a total of 10 inches of rain, falling at a rate of 2-4 inches per hour. Suffice to say, the city was completely overwhelmed by the amount of water. I actually feel lucky that we got off as lightly as we did. I bailed continuously until about 12:30am when the rains let up, and then we had a few days of using the shop vac, the dehumidifier, and our handy carpet-drying fan. Some of our neighbors were much worse off, with inches or feet of standing water in their basements, and sewage back-ups that necessitated stripping their basements down to the studs and starting over. So, all in all, I can't complain, although I do think we will look into installing a sump pump before next summer.

Reflecting back to the post I was planning to write last week, I cannot believe that Lemon (and this blog) have crossed the half-decade mark. This is a tremendous milestone for him, in that 50 years ago, kids with CF usually did not survive to see the age of 5, and I am beyond grateful that we live now and not then. I'm also tremendously thankful to everyone who was involved in the research has taken place over the last 5 decades. It is thanks to those patients, clinicians, and scientists that we have on our hands a child who is in the 70th percentile for height, and an astonishing 92nd percentile for weight. A child who has not been admitted to the hospital in almost 3 years. A child who is slightly aware that he is a little different than most people, but not so very different.

I also wanted to thank all of you, loyal readers. It brings us great joy and comfort to know that in good times and bad, there are about 200 of you out there every week cheering us on.

And, on to this week. This is our last week before the grand adventure of kindergarten begins. Lemon and I went to a little orientation at his school, so he could see his classroom and meet his teacher. I think he's excited about it, although it's a little hard to tell. The one thing that I'm a still concerned about is that we don't yet have a firm plan in place to deal with his enzymes. The nurse who used to cover his school retired at the end of the past school year, and although I am led to believe that a replacement has been hired, Lemon's teacher has not been able to get in touch with her. She said she would reach out again, but we have literally 8 days until that first in-school snack, so we do need to get a bit of a move-on. I'm fine with waiting til October to get the formal 504 plan in place, but we need a plan to deal with that first snack by no later than snack time on the first day!

Meanwhile, we are on a quick family get-away with some special guest stars, Grandma Carol and Grandpa Dudley. We are in the town of Lake Geneva, which is a little summer spot southeast of Madison. The day of our departure was 7 hours of "Why aren't we leaving yet? Can we leave now?" followed by 90 minutes of "Driving is so boring. Are we there yet? Where is Lake Geneva?" But, now we're all here and having so much fun that we have to get up at 5 a.m. to maximize the amount of enjoyment that can be gotten out of any one day. Ah, vacation.

The only little dark cloud in the sky is that Lemon very definitely has a cough. I had been sort of hoping for the past couple of days that it was nothing, or maybe a few allergies since his nose has been a bit stuffy the past couple of days. However, it has become pretty clear that he is definitely not at baseline right now. We have 8 days to get back there before kindergarten starts, so I am thinking that even though we are on vacation we are going to have to ramp up to therapy 3 times a day to try and shake it out of him. It's such a shame to take time away from the pool and grandparents and everything else, but health always has to come first, and we really need to be at baseline before kindergarten begins. I talked with his teacher and we came up with some strategies to deal with the times when he needs to do a treatment 3 times a day during the school year, but I really don't want to be testing out those strategies during the first week!




Monday, August 20, 2018

Week 261: Sink or Float


This has been a momentous week in ways both expected and unexpected. 


Expected: Our hero turned five! 

Unexpected: At his five-year physical today, we learned he is in the 92nd percentile for BMI. 

Expected: Summer has continued to bring a variety of types of weather, most of which are beautiful.

Unexpected: One of these types has weather has resulted in me currently bailing out the basement, one five gallon bucket at a time. 

Expected: One day, words written by Papa Bear would appear on this blog. 

Unexpected: That occasion would arise while he was taking dictation for me while I was bailing (see aforementioned bailing). 


Expected: some blog posts will be longer than other blog posts. 













Unexpected: The blog post marking a half decade of the existence of this blog would be among the shortest. Thank you all for your love and support over the last five years. A more thoughtful post on this momentous occasion will follow in drier times.







Monday, August 13, 2018

Week 260: Goodbye, Miss Katie

This year, for the first time, the kids expressed interest in having a joint birthday party. Being the top-notch organizers that we are, and having very little else going on in our household at the present moment, Papa Bear and I looked at the calendar about 10 days ago and realized that there was exactly one weekend left in the summer that we could have the party. Fortunately, doing things on short notice does substantially limit the amount of time one can spend sweating the details. We sent around a quick Evite to some local friends, put together a cake, found a bottle of juice in the basement that may or may not have been left over from some previous occasion, bought a dozen bagels, and voila. One party. The kids loved it, and Lemon was only slightly confused about the party not being on his actual birthday.






The theme of the party ("three, five, we survived") was derived from something another mom with closely spaced children told me. I was buying some baby item or another from her when Lime was an infant. When she asked about the particulars of our children, I told her their sexes and ages, she said, wisely, "Ah." After a moment, she followed up with, "Well, if you make it to three and five, you'll know you've survived." And, my friends, getting ahead of myself by only 6 short days, here we are. On the cusp of having survived. I can hardly believe it.





In another sign that summer is drawing to a close, today was Lemon's very last day of food school. After a year and a quarter, I feel like he is leaving it in a good place. I certainly had my doubts about it along the way, and almost threw in the towel several times, but I'm glad I didn't. He learned a tremendous amount from his teacher, Miss Katie. She was able to teach him so many things, and give him the confidence to approach foods without fear or anxiety. Eating enough by mouth to become totally independent of the tube is still a huge challenge--and honestly one that I don't really focus on at all any more, especially knowing that there are plenty of adults with CF who also use a tube. But, if Lemon ever decides that he wants to take on that challenge for himself, he has the tools to try. More importantly, he has the tools to go to school and actually know what to do if he feels hungry. He has the tools to go to someone else's house for a visit or a party and partake in a social meal without worrying about it.


















Lemon has not had a lot of definitive goodbyes in his young life, probably only one or two that he can even really remember or process. But boy did he understand this one. He managed to keep it together until we got to the car at which point he burst into tears and cried most of the way home. At one point, he stopped crying for a second to report, "Mama, I'm so sad there are boogers coming out of my nose!" This from the child who used to beg me to stop food school altogether because Miss Katie would push him to try new things and eat more bites. I guess she won him over in the end, and we owe her a big debt of gratitude for her hard work and persistence. Goodbye, Miss Katie, we will miss you!

Monday, August 6, 2018

Week 259: Itsy bitsy

Little Lime had his 3-year-old check up this week. Result: still tiny. He is in the 12th percentile for weight, and the 7th for height. At first they thought his height had fallen off the curve, but it actually turns out he is less than cooperative at having his height measured standing up, so we measured him again lying down and stretching him out as much as possible, and that was enough to get us out of trouble. Other than that, the doctor said he looked great, and made the shocking assessment (based on observation of behavior and a quick bruise/scrape count) that he seems "very active." Yeah, you're telling me. You should see my house.










Today we had Lemon's second-to-last session of food school. I can't quite believe that the end is in sight on this journey, but the planets have definitely aligned. Over the weekend he tried/ate such a wide variety of foods that I was kind of in shock: tortellini with pesto, pastrami, artichoke with garlic butter. We also decided to try giving up the morning bolus feed and do ~150 calories by mouth. I think we're actually doing pretty well in that respect. Lemon will reliably drink 6-8oz whole milk with his enzymes in the morning. I've resorted to some of our old pre-g-tube tricks to give that a little boost, adding some heavy cream or Ovaltine powder. He also likes to have a snack in the car on the ride to summer camp every morning, which is why the inside of my car resembles an up-ended bird feeder. But, hey, if he gets in another 100 calories in trail mix along the way, I can deal with vacuuming up a few raisins.


I can't quite believe how fast fall is coming up. Next week is the last week of camp, and then we head into a couple of weeks of family visits and other fun stuff before school starts. In preparation for all this, I printed out the school supply list for Lemon's school and started buying some of the stuff. And, I 100% support education and I am fortunate enough not to have to worry about the cost of the supplies, and I get that it's for the whole year, but I have to say I am shocked by the quantities. Five boxes of markers? 36 glue sticks? Times 20 kids? What are they going to do with 1000 markers? Glue them together I guess? I realize my particular child may not be representative, but I would be surprised if he's had the attention span to use up one marker and one glue stick in his entire life. I suppose the hope is that kindergarten will change this? In any event, some of the items on the list were categorized as "wish" items, not required ones, and I decided that I will make it my personal mission to make sure the classroom never runs out of the school supplies that I care most about: Clorox wipes, tissues, and hand sanitizer. Given the consumption rates that I'm extrapolating from the other supplies, I'd better get back to Target to pick up several hundred units of each.